An apology to a guardian angel

I am beginning to realise that I have been lucky.  My guardian angel is a generally a conscientious and energetic spirit but at times I admit I have been rather short and sour with it, and quite failed to show the respect due to guardian angels.  Perhaps never more so in the years living with an unnamed illness.  I have described before the bitter frustration of the bland reassurances that my increasing problems with mobility were "nothing serious".  So often was I thus "reassured" that I christened the illness Nothing Serious, or NS for short.  The frustration was acute in the early years.  I would have mortgaged my ears those days for a label, anything I could present to family and colleagues to explain and excuse my failing abilities.  I was inclined to feel Hard Done by, and regarded my guardian angel somewhat coldly in those years.

The diagnosis of Parkinson's, after fifteen years of NS was abrupt and unsought.  I had been having increasing difficulty  running.  I had even written before the consultation to suggest that we dispense with seeking a diagnosis, as all prior attempts to arrive at a diagnosis had resulted in fruitless frustration after tedious tests and outpatients exams. Perhaps we could just talk about strategies to help muscles adapt.  The consultant however did not appear to have any doubts in his mind.  The consultation had not lasted many minutes.  He sat down briskly and started writing.  "I can tell you what you've got. If you want to know, of course."  Er, come again?  Please sir, no sir, I don't want to know anything sir, or why I have come to see you sir? The end of man is to know (Robert Penn Warren, All the King's Men).

The years of NS undoubtedly cushioned what might otherwise have been a severe blow.  It was a shock even so.  I had to go straight back to work that day and host a farewell party for some two hundred students.   I got a colleague to see to setting out the nibbles, and took a turn around the grounds, three deep breaths, and then pretended (with indifferent success) that no thoughts beyond the future careers of our students troubled my mind.

Having a diagnosis brought advantages  A diagnosis made chemical assistance of a specific nature available.  When I finally got the stuff, it worked a treat; my running speed improved by two minutes/mile overnight.  There were social gains as well.  I had an explanation.  I had been acquitted of all the charges implicit in the diagnosis of Functional disability.  I could plan.  I had a rough time-scale, and the chance to think constructively about how I wanted to spend my likely allotted span of active life.  

I was, I am, grateful for an answer. But the double-edged nature of having a diagnosis gradually became apparent over the summer. Benefits that I had imagined would follow in the wake of a diagnosis proved hollow.  In the early days of NS I had been desperate for a support group.   I made one rather desultory visit to the Parkinon's UK forums.  It didn't feel like home.  Nobody wanted to talk about running.  More sinister, Parkinson's the Explanation began to transform into Parkinson's the Excuse.  The drugs enabled me to run faster, but the diagnosis made it harder to get out the door.  Why bother?  Does it matter whether I hang up the trainers now or in 2016? What's the point?

It took a couple of months to pull out of that slough of indifference.  I was lucky (I told you so), in that during the years of NS I had learned an elementary truth.  There is one, and in my experience only one, effective alchemy capable of transforming the bitterness and leaden despair of misfortune into the 24 caret consolation of enduring satisfaction.  That is to give.  

You can't be really poor so long as you can give.  During the years when I generally got up, saw the kids to school, walked the dog and then came back and went to bed until the kids came home again I spent many of my waking hours  playing string quartets and chamber music with school kids.  As honorary teenager in the viola section of children's orchestras I had a privileged position; part of their music, part of their lives, caught up in their exuberance, excitement and energy.  Honoured indeed, and soul made whole through their generous spirit.

In running too, the great reward had little to do with speed. (I still quite fail to see the point.)  My first post-sticks half was run in honour of a young friend of mine, ten years old when she was diagnosed with a brain tumour.  She endured two brain operations, radiation therapy and two interminable years of savage chemotherapy. For a while we both used sticks.  When I got rid of mine, I made her a deal.  She was to choose the charity, I would run the half marathon and do the begging.  She chose Clic, I and a dozen sailors from the sailing club to which Lizzie's family and ours belonged trained over the summer.  We netted over £3k for the cause.  I ran in grand company that day.  The race was in the same village as the club and sailors who weren't running turned out at strategic points to cheer, and a hearty tea was available at the club following the race.  

So I knew what was required to burn off the fog of indifference.  Phil, one of the sailors who had run for Lizzie had himself come down with leukaemia, and was having a rotten time with the chemo.  I made him the same deal I had made Lizzie, thinking to run London marathon for the charity of his choice, Leukaemia Research.  Slight hitch, I didn't get a place, not even a golden bond place.  Knowing that I was not going to finish in under six hours, entering a different marathon was not really an option.  Most marathons have six hour cut-off times, which I respect, out of respect for the marshals.

Nothing for it, I measured out 26.2 miles along the banks of the Cam, beginning and ending with our own club waters, extending up to Ely with a loop around the city to fill out the miles. All last January and February I practiced, running the river banks at their very muddiest, learning all parts of the route, taking photos and preparing a guide for the sailors and friends who were to join in running all or part of it.

It was a magic day.  Over 45 sailors and friends took part one way or another, running, walking, swimming, sailing or climbing (on a climbing wall).  Toddlers and octogenarians joined in, slogging around the two mile loop including Bottisham Lock and the bridge at Clayhithe.  The clubhouse was bursting with over 60 people eating all day, and yet the supply of sandwiches, cakes, quiches, pies, crisps, sausage rolls, pasties, salad and trifle never failed, such had been the industry of those who supplied the galley.  And Phil was there to see every runner home.  Running doesn't get better than that.  Alchemy effected.  The fog dispelled.  There will be a day when I hang my trainers up.  But it's not going to be a day earlier than it has to be.

Did I tell you I was lucky?  The years of NS were a severe but effective apprenticeship.  It wasn't a matter of learning to live with the disease, it was a matter of learning to live.  

I had a very sobering weekend not long ago, when I joined for the first time in a Parkinson's UK Working Age group local meeting.  There were three of us, together with three professionals, meeting to discuss the annual Event.  One was a woman who had been diagnosed about ten years ago, apparently coping well with the disease, and the other was a man newly diagnosed.  Difficulties with running had led him to seek advice.  He had given up running.

I wanted to shout, tell him No No No do Not stop running.  Learn how to stretch the psoas so that they don't double you up and make running (and a lot else) impossible.  You can, you can, you can!  But my story is not his story, my illness not his, and the assumption that my experience qualifies me to advise (and implicitly to judge) is inexcusable arrogance.  I kept (mostly) quiet.  

But I began to understand how much I owed to my guardian angel, who withheld the diagnosis until I had learned how to live.  If I had had the label of Parkinson's from the start, would I have had spirit enough to defy the diagnosis and try and run?  I don't think so.  I would have found a home on the Parkinson's UK forums, not on the Runners World UK daily training thread.  At best I would have felt gently sorry for myself and tried to put a cheerful face on a life of limitations, contenting myself with the consolation of sympathy.  Gratias ago tibi, guardian angel, for teaching me the lessons I needed to learn before shouldering the label.  

But I still want to shout.  There is so much that I have learned, that might be of use to others should they wish to try it.  Go google Parkinson's and Psoas.  A paltry 200,000 some hits.  Not one of them appearing to recognise the enormous benefit to us pd peeps in understanding the role that muscle plays, and how to stretch and strengthen it.  I reckon we have something we can teach runners too, about the nature of Hitting the Wall, and something to learn too, namely that just as runners who train adequately for their marathons do not hit the wall, so adequate training might also help us avoid such painful encounters with the unmoveable.

I want to shout.  I want to share what I've learned, grace to the good offices of my guardian angel.  There must be others who might find as I did a second life through better understanding.  And a lot of hard work and determined training.  But it's worth it.  It's worth it for every day that I can run that I might not have been able to.  To me it's worth it.

Others will have other priorities and other enthusiasms.  I know that muddy trails are not for everyone. Just, please folks who share the illness, whatever it is that you love, let that define your life, and not the label.